Getting better

Ammon decided he did not want to be here at the hospital very long. The poor kid was trying to roll over, grab the hose off the bipap, crying and shaking his head back and forth. They finally had to sedatate him on Tuesday night. I guess that's just what he needed though, after sleeping for 12 or more hours, he woke up Wendnesday morning like he was just fine. They took the bipap off for a trial, put it back on, took it back off, and kept it off. He received a blood transfusion yesterday because his hematicrit was dropping and I mentioned he looked very pale. Other than an occasional cough, he seems back to normal. He was tearing up paper and watching football bowl games with Dad today. It was so nice to see him smile when I came back tonight. I felt bad having to put the bipap back on and telling him to go to sleep when he was so happy and excited to se me.

There have been nights in the past where Ammon has had some rough days and all of a sudden he just seems happy, especially if Brian has been gone a lot, where we will let Ammon stay up and play with Brian until he is totally worn out. I am grateful we were able to catch his cold before it got worse. I think we will be going home first thing (which means 3 in the afternoon) tomorrow morning. It was nice to reunite with nurses and doctors that saved his life a few months ago, but we will try to stay away from here in the future. We will be quarantining ourselves for a while...especially Brynn, she's the one who got us all sick. She's doing better too. She just had a runny nose that turned into coughing, it really didn't seem that bad. It's being on the chemo that just makes everything ten times worse for Ammon.

Christmas Happenings...

We had a wonderful Christmas! Coleson and I went to church to enjoy Christmas musical numbers and stories. Meanwhile Brian stayed home with Ammon and Brynn, who was so excited to go to church with her new doll that had a matching Christmas dress. Her nose began to run too much so she stayed home. Coleson was promised gifts would not be opened until he got home. I'm glad he enjoys Christmas music. He got to attend the Mormon Tabernacle choir performance last week and enjoyed it immensely. He has been going to school early for the last few weeks to sing Christmas carols. For the Cheney family Christmas Eve party he performed Nottin' for Christmas, his new fav.

Everday I have school time with Brynn and Ammon. Brynn has been learning the correct words for Jingle Bells, while Ammon shakes bells. It takes humility on her part to let her Mom tell her the right words. After one day of showing her how to spread her fingers out to play one note at a time on the piano and start with middle c, she doesn't need my help anymore. "Brynn do you want me to show you how to play Jingle Bells?" "No, I know, watch Mom," as she sings Jingle Bells proudly and plays whatever notes on the piano. After singing the chorus 4 times in a row "See Mom, I know how to do it." I just smile and say good job. The whole car ride down for the party she was singing Jingle Bells and then when it came to perform, she bravely marched up to the piano, struck one note, and was hit with stage fright. Maybe next time. I never know when Brynn will be hit by shyness, but it's usually just at the right times to make awkward moments.

Brynn got a big girl princess bed for Christmas. I think I was just as excited as she was. She's been crawling into bed with us for the last week or two, so my count down to Christmas started being count down 'till brynn gets her new bed so maybe she will sleep through the night again.' Her babies got a cradle too, so everyone slept good last night. That is except Ammon. He started crying around midnight and so I started sleeping next to him until he calmed down. Unfortunately, his condition got worse and worse... nasal and throat congestion, super high heart rate, labored breathing. At noon he started getting a fever and then we knew it was time to take him in. So Monday night I am hear with him at the hospital. Hopefully not long term. All his x-rays and blood tests have come back normal. So it's probably a cold virus making him all stuffy and unable to clear himself. He was doing so good until chemo on last Thursday. He just hasn't felt good since, but he was ok until today. It's never fun to come to the hospital and hear, "Oh there's Ammon." I don't like the fact that I run into nurses and doctors I know in the hall. I am still proud to have the title of Ammon's mom, though.

Update..We were moved to the PICU early Tuesday morning because he just could not maintain his oxygen saturation level. He has Human metapneumovirus, like RSV, so they expect it to spike on the fourth day before he gets better. With a virus you just have to let it run it's course, but this way we can have a little more pain medication and suctioning to make it more tolerable. We should be able to go home by the end of the week as long as his blood counts stay up.

Anyway, we've had a great Christmas and I hope all of you had a great Christmas too....and Happy New Year!

Magical...

Magical! That is pretty much the best way to summarize everything going on. Let me start this post by sharing something with you (but if you're not in the reading mood, please go straight to the videos below). At times we feel compelled to speak on Ammon's behalf in a very literal sense. We are Ammon's voice and words at times. We try so hard to convey verbally the things that Ammon is wanting to share through his feelings, movements, and expressions. Many nights when it's Ammon's turn to say family prayers, someone in our family will be his voice, as if it were Ammon speaking, and we try to say the words that he wants to express (at times this is a daunting and humbling endeavor, but to hear Brynn be Ammon's voice is unforgettable). Sometimes in these prayers we sense that Ammon is praying specifically for a family member or friend, is praying for how glad he is to be part of our family and have the friends he has, or is simply praying for a good nights rest. But being Ammon's voice is only one of the many ways that we sometimes feel compelled to speak the words on his behalf.

Just like all of us, Ammon has specific missions that he has been sent to accomplish. In being Ammon's voice at times, we've learned that one of those missions is to bring joy and inspiration into the lives of his family, friends, and even strangers. We've realized recently that Ammon knows this is one of his missions and gifts, and he experiences great joy in return as he sees this particular mission being fulfilled. Several recent examples in this regard, among the many. Santa coming to our house this last Sunday was the result of one of Ammon's newest friends that only met him the day before. She had never heard about or even really knew Ammon until Saturday, yet in the short time she was near him and was able to hold him in her arms, Ammon conveyed an eternal sense of happiness and joy, without even saying a word. So much so that overnight she was inspired to return to our home again in the morning to be with Ammon, hold him tight, and organize a visit from the real Santa.

On Monday our family had the opportunity to go on the annual hay ride put on by our friends and neighbors. The hay ride goes around the neighborhood, with Christmas songs ringing, and about 20 happy riders for each trip. On each of the three trips our friends graciously stopped the hay ride in front of our house so Ammon could wave Hi from the front window. While we were warming ourselves by the fire and eating treats after the ride, many people expressed how much joy they felt just through Ammon's presence at the window. I was particularly happy this night because I also got to see my little friend Sophie (Sophie is a beautiful little girl with special needs that radiates many of the same feelings that Ammon does).

We still can't say enough about all our secret Santas, and all of our friends and family that continue to selflessly serve and love Ammon and our family. Through all this service, Ammon is realizing that one his missions is being fulfilled on a daily basis and this has recently brought him so much joy. Over the past few days Ammon can hardly contain himself at times, and the joy he's feeling from each of you is being shown in his laughs and smiles. In fact, we haven't seen Ammon this happy or laugh this hard in a long time, at least since before his diagnosis. So without further reading required, please enjoy laughing with Ammon (in one of these he might look like he's crying, but he's actually laughing so hard he almost can't breathe).

There is magic this time of year!

We feel truly blessed...Santa came early to our house. First his elves have been busy cleaning our house, organizing Legos, rocking Ammon, and they even dropped off some giant boxes with tons of presents for everyone in the family.



We have greatly appreciated them and have treasured them by opening one a day as a countdown to Christmas.


Then Santa came to our house today...I guess he knew that Ammon has not been able to sit on his lap and if he just came on Christmas Eve, we would not get to actually see him.


He brought the softest blankets for all three kids and Brynn got to sit on his "comfy" lap with Ammon. Ammon couldn't stop touching his beard. Brynn was jumping for joy. She didn't think that Santa had ever been to our house because she had never seen him. She would even tell me afterward when others asked if she was excited for Santa to come, that he doesn't come to our house. She can tell everyone now that she has seen him and he did come to our house. What special gifts of service have been given to us this week. How did they know a mom wanted to buy her daughter a nightgown and hasn't been able to. How did they know our son needed more socks(again) How did they know Ammon just needed someone else to rock him. Tears of overwhelming gratitude continue to be there. Thank you Thank you to our secret Santa helpers!



P.S.Our friend Spencer got a new heart on Friday and continues to do great, he might go home by the end of the year!

There's Someone Special 'In There'

We've recently had friends remark that they did not realize everything that Ammon could do. Some didn't know he could laugh, that he could interact, or that he could really even smile. They've expressed their gratitude for the blog over the past two months, because they have come to realize everything wonderful that Ammon could do, particularly with a little time and love (which you'll remember are Ammon's favorite things). Most have already felt Ammon's strong spirit and the joy he radiates and inspires, but there is so much more that everyone has been learning about him. Most people don't say these exact words, but I know are conveying that in some regards they've come to realize that there is someone 'in there' and they've come to know him better.

In some regards, at times it appears that Ammon has the same attitude and characteristics of the reclusive 16 year old teenager. You carry on one sided conversations with the teenager, you organize engaging and fun activities with the unresponsive headphone wearing teenager, you sometimes even yell really loud at them how much you care and worry about them only to receive a blank expression in return. Then one day that previously unresponsive teenager, that you didn't think was listening, or cared, or even loved you, will quite suddenly put their arms around you, hold you real tight, and emotionally whisper, "I love you. Thank you for talking to me, thank you for the activities, thank you for telling me so strongly how much you loved me. Thank you for always being there for me." Turns out they were there all along, they were listening, they were watching, and finally something clicked and they recognized the time and love you had always given them.

If you really want to get to know Ammon, sometimes it requires an investment of time, sometimes over hours, days, and weeks. Most people are wanting and willing to truly know Ammon, but the realities of life and the shortness of time does not allow it. In our fast paced world, when we say Hi we expect to hear an immediate Hi in return, or at least some type of recognition. If we don't receive that immediate response, we naturally wonder if anyone was listening, if they care, or even if someone is 'in there.' And due to those real world constraints, sometimes Ammon's cerebral palsy and seizures simply don't give him the opportunity to react fast enough.

Trust me when I say, that contrary to the reclusive teenager, Ammon wants to say an immediate enthusiastic hello when someone says hi to him, but sometimes his tongue won't move the way he is pleading it to and his muscles won't contract and respond in the way they need to, to even elicit a sound, at least not immediately. Sometimes his mind is shouting, "HELLO! Please hear me, HELLO!" But all that comes out, and thats usually after 20 seconds or more of true exertion and effort, is something similar to a sigh or a breath. Sometimes, I feel, that Ammon has learned through repeated attempts that his muscles won't listen to him and his nerves won't fire, and by the time they might listen to him, what he was trying to get them to do has already passed, so why even try. Some days, when the seizures are under control and the stars are aligning right between Ammon's mind and his body and muscles, if you are patient, and if you have a little extra time on your hands, you will see the sweet inspiring boy that is in there. You will see the young boy that shouts for joy when a brother or sister stops to play with him or sing him a song, when a mother tells him how happy he makes her and how handsome he looks today, or when a father simply walks in the door. You will see how much joy he experiences at the opportunity to walk, with legs marching and pumping uncontrollably. You will see how much he loves to make and wear a crown in Primary, be included in a fun song with actions, and included in circle time at school. You will see how much he really loves you, that he recognizes and knows you, and is grateful for your friendship and your kindness.

If you are patient, and have a little extra time, you will see. You will see the outward and physical expressions of joy, service, and gratitude from Ammon, similar to what you feel by just being near him. And if you're like us, once you see, you hold those moments really close, you write them down, and you never forget. And everything you do from that point forward is to constantly involve him, pray for him, give him experiences, and shower him in love, because you never know when the stars in Ammon's mind and body are going to align again and the sweet inspiring boy inside will be able to physically respond to your hello with a beaming smile and a shout for joy.

Ammon Update

Ammon continues to do well at home. Every time he goes to bed he gets a half smile and looks around, like this is my bed. I was nervous this week, with a new oral chemo medication, that he might not do so good, but he seemed pretty normal. He still has nights where he wakes up and cries, so I usually end up lying next to him and rubbing his arm or stomach. We think either the bipap or the chemo is causing a lot of gas in his stomach, which we will "vent"-open up his gtube to let air escape-quite frequently. Yesterday, the kids had him smiling and yelling on the couch while they rubbed his head and said "fuzzy head". He is finally starting to grab more, move his legs and do a half body roll-more like a twist. I was excited when I noticed today, while we played on the floor that he was doing this half twist until I was reminded how bad that would be for him to roll over with all his tubes hanging out. That is why we never got a GJ tube in the first place, I knew he would roll around too much. Even though it still makes me sad that he can't move a lot or bear weight, I guess it has been good for his recovery to be still.

We were able to get rid of his 2am med(hooray), his phosphorus levels went back to normal. Tomorrow is another Chemo appointment and on Thursday I get to take him to get his new gait trainer. I started the process at the beginning of the summer to get this new walker. He outgrew the one we had. It's a process to make appointments, have the insurance approve, get measured, custom order it, and then wait for it to be made and then make another appointment to pick it up and adjust it. When they called me a few weeks ago saying it was finally ready, I tried not to cry on the phone to tell them we were excited, we had been waiting almost 8 months, but he has changed, he can't stand or walk anymore. It's not a waste, it will work as a stander and help him slowly regain his strength and hopefully by the time the snow melts in the spring, he will be out cruising the sidewalks again.

Happy Birthday Coleson!

This is from Nov. 14th...Coleson turned 9! He's growing too fast. My dear dad came and sat with Ammon at the hospital while I joined the family to celebrate.

Coleson and his cousins helped push Brynn all the way up there. Brynn loved it, I was ready to jump in the first time she attempted it, but the boys were there to protect her.

Coleson is such a good big brother and has been a good sport about his parents being gone all the time(maybe a little to excited to not have parents around).

"Seriously Mom, I'm too old to take pictures on the first day of school"

He has been busy with school this year, taking on extra projects in a special program. He has always been very out going...even making up for my slack sometimes..but it seems this year, even with going to a new school, he has learned to make other kids laugh, even so much that he occasionally gets to be the "voice of Lakeside" and make announcements over the intercom. They had an economics fair where he made a product(thank you Amanda,Seth, and Magga) and sold it. He made Bottle Cap Angry Bird Tic Tac Toe and BYU vs. Utah. He was so excited to sell stuff. He sold out right before I came to his school. It was fun to see all the kids so excited to sell their creations, I wish I could have bought something from everyone..I have a hard time ever passing a lemonade stand without buying something. There were only a few minutes left of the day so the teachers announced that the kids could finish by naming their own price..like black friday..the gym errupted with yelling..one ticket, buy one get one free.. I think our kids have seen a lot of adds..it was hilarious.



Coleson had a good soccer season, even playing goalie sometimes. He is now learning to play indoor.

Coleson loves to read and read and read. Some of his recent books are A to Z mysteries, Harry Potter Prisoner of Azkaban, and Warriors. He is still a Lego maniac and is good at making his own creations. I can't say enough of how I love my Coleson!


Coleson has learned, through all of Ammon's experiences, that one way he can get Ammon to respond to him is by taking the time to read to him. Ammon loves to be read to.

Update On Spencer...

We'll have another Ammon update here shortly, there are many happenings over the past week to share. You might remember this post from a month and a half ago concerning a young boy named Spencer. Through prayers and miracles, Spencer made it back on the heart transplant registry and hope was restored. He is now still waiting for a heart to become available. His parents, Nancy and Matt, became our friends while we were all in the PICU together at Primary's, and they continue to be there with Spencer until a heart is found. Whether it's heart disease, cancer, or dozens of other unique and critical child illnesses, the similarities across each of them is the bond of faith, hope, love, and miracles. Transplants are an interesting miracle to pray for, and require remembering not only Spencer and his family, but also the family of the heart donor. Spencer needs another miracle, and he needs our continued faith and prayers in asking for one. As you continue to walk with and pray for Ammon, we invite you to please remember our young friend Spencer as well.

The Bell...

I love Christmas time. I love the stories of Christmas and charity, and recently I’ve thought a lot about the symbol and sounds of bells during this time of year. In the movie, “A Wonderful Life”, George Bailey doesn’t realize all the good he has done in his life, all the dozens and even hundreds of people that are eternally better for knowing him and being served by him. George has an angel assigned to him named Clarence, that lovingly serves him and helps him to realize the great success and service of his life. Clarence hadn’t earned his wings yet, which in this angel’s world are given as a symbol of recognition for blessing those that he has been given charge over. At the end of the movie, a bell on the Christmas tree rings, acknowledging that Clarence had successfully fulfilled his responsibilities and his opportunities.

In the movie “The Polar Express” the bell symbolizes a child’s ability to believe in the true meaning of Christmas and all its wondrous stories. You can only hear the most beautiful peals and rings of the bell if you truly believe, there is no other way. For those that choose not to believe, the bell rings silent and is considered broken and worthless. To believe and to allow the bell’s joyous sound to enter your heart, allows for miracles to occur, again and again.

There is a bell at Primary Children’s Hospital, located on the fourth floor in the children’s cancer wing. It’s a small bell with a loud clear ring that hangs on a central wall in a revered spot. This bell serves a special and unique purpose, and symbolizes triumph over one of the most difficult journeys a child is asked to bravely traverse. We heard the bell for the first time at the beginning of October when Ammon was originally diagnosed. We were sitting in Ammon’s hospital room and his nurse, Andi, had to excuse herself because it was time to ring the bell. “What’s the bell,” we asked, and she told us she would tell us all about it when she came back. Curiosity getting the best of us we listened intently at the door of Ammon’s room. It was clear that everyone that worked in the cancer wing was gathering and there started to be quite the celebratory commotion rising. We heard cheering, followed by singing, followed by clapping. Then for just a brief moment, everything got really quiet. Suddenly, in that moment of silence, we heard the sound of a bell being rung vigorously, and the cheering erupted to new volumes. Summer, Ammon, and I knew we had just listened to something special, something miraculous.

A while later, Andi returned to Ammon’s room with a smile and a cookie shaped like a ginger bread man that she gave to us. The cookie was missing a leg. Andi then proceeded to tell us that the bell is only rung by very strong and special children and youth. Once a child completes their last chemo treatment they are awarded the privilege of gathering with their family and friends, including all of their new friends at the hospital, and ringing the bell. The young man that rang the bell this day, lost his leg to cancer, but he still won the fight. And according to Andi, he won it with a smile.

With celebratory cheers and song, we’ve heard the bell rung a couple of times since then, and each time it brings a joyous and emotional response. Whenever I’ve heard a bell so far this Christmas season, I always think of Ammon’s cancer journey and what he is enduring. For us, the sweet ringing of bells is a symbol of victory, of endurance, of joy, and of miracles. I believe in the sound of that bell on the fourth floor and all it symbolizes. I believe in the hope it conveys. I believe that Ammon will ring that bell someday. Until that day comes, I listen for the sound of bells, and I believe.